Diary of a Goldfish: It's a dangerous business, Frodo, going out your door.

Sunday, November 26, 2006

It's a dangerous business, Frodo, going out your door.

Most of my travelling adventures took place when I was able to walk a bit further. There are many reasons why I haven’t used public transport since the relapse to end all relapses back in 2002, chiefly accessibility (obligations for public transport under the Disability Discrimination Act come into play in 2020). However, I guess I can use this post to talk about my experiences as someone with an invisible impairment, as I was before I began to need the wheelchair for most journeys out of the house.

I did have a mobility aid of sorts; a foldable stool which I carried on my shoulder everywhere I went – you too can have one for just £2.99. This meant that I could sit down almost whenever and wherever I went. And I did; I used to walk a bit, step out of people’s way and sit down, walk a bit further and sit down. I would also sit down at bus stops, on station platforms, waiting for a taxi, in queues, anywhere I would otherwise have to stand. This worked far better for me than having a stick or a cane, but it meant that there was no sign of a problem when I was actually on my feet.

(Incidentally, this is a very useful item to have in the house for people who struggle to stand. It is a cheap item which will eventually collapse, but I still have one in the kitchen so I can sit down while the kettle boils and that sort of thing).

Anyway, people work on what they see. In my case they saw a slim young woman with a fairly normal looking gait. Now this was no problem whatsoever, in principle. It was very often a problem in reality.

On the least disastrous end of the spectrum were things like the fact that I couldn’t give my seat up to someone who was elderly, pregnant or otherwise more frail-looking than I was. Which made me feel uncomfortable even though it is possible that nobody ever noticed. Meanwhile, nobody would automatically think to give up their seat for me and I couldn’t stand for the length of time it might take to plead my case. Nor was I ever pretty enough to make young men simply fall off their seats. So if the bus looked nearing full capacity I simply couldn’t get on.

Somewhat more problematic were the transport staff who would use my perceived fitness to cut corners. The sort of thing that wouldn’t have mattered to a fit young woman. Drivers who missed my stop if, having rung the bell, I didn’t stand up and make my way to the door well in advance. The next stop would only be 100yrds down the road, not two minutes agonising walk, not two or three extra days to recover from the trip… And then there was one particular bus-driver, who spotting this young woman at the bus stop (sat down on her foldable stool) decided not to pull in to the lay-by at all. He stopped the bus in road, holding the traffic up and shouting at me to hurry up as I crossed the road. When I told him where I was going (three or four stops away), he proposed that he should charge me double for being so bloody lazy.

On the most disastrous end of the spectrum, I struggled to get help when things went wrong. The worst train journey I ever took found me at one particular station absolutely packed with other people, tempers frayed since there were no trains and no information about when the situation might be resolved. The station staff weren’t speaking to anyone, and there was no visible sign that I was less able to cope with the situation than anyone else. In the end, my sister, who was elsewhere, phoned the rail company and described to them the conditions in which her poor crippled sister was waiting in. At which point they kindly put me in a taxi for the remaining ninety miles of my journey – for free! But honestly, I was in a rather bad state and any longer and they might have had to stretcher me off that accursed platform.

And that is the real killer for someone with my sort of condition when it comes to travelling; I could never afford for things to go dramatically wrong. I did a lot of travelling alone by train in my late teens when I was at this level of health and had total confidence in my ability to work out where I needed to be, to deal with minor set-backs, to find help and information should I need it. But the more my physical and cognitive stamina deteriorated the worse the worst case scenario became, until the last few journeys I made were taken in a state of complete anxiety.

Once agin I sympathise and you inspire me maybe should post, if I haven't already some of the adventures I have had through attempting to use public transport in fact maybe that's a good idea.

I use a chair turned backward to peel spuds at the sink, not using the chair to peel but to kneel on I also often kneel ona chair when using machinery, imagine the health and sfety rules I breach just doing that.

Last time I went by train a 1.5 hour journey ended up taking 3 hours and on the return trip homeward bound communters insisted on spraying themselves liberally with perfumes and deodamnents just as the train pulled into each station! Not good from chemically inured brain damaged old people I can tell ye!Regards and thanks Rocky Spring!

There's so many little things that turn into big things, once you're sick. And it's frightening how quickly a regular outing can turn disasterous: I still maintain that the flight of stairs I had to climb to get to my sister's sweet 16 took me over a year to come recover from. As far as traveling, I'm not in any shape to even consider doing so on my own, right now, but I remember how much worry there would be over every little thing: if the train was late, what would I do? What if there wer no chairs? What if ... on and on.

I think you've written a great post about the anxieties of travelling while ill.

Anonymous said ... (12:47 AM) :

It's not so much the long travels that get me -- I don't do many of them and I drive myself, which is a whole other list of worry -- but little things like oh, grocery shopping. Sometimes I get so very tired I can barely stand. But I certainly don't look like the sort of person who should be having problems. Well, unless you want to count the fact that I'm a fat girl :) Which, usually, is what people assume -- stupidly, but there you go. I also hate the looks I get from people when I take the elevator up to the second floor. Because clearly, I could be walking those stairs and it would really be good for me, really. Except that they don't realize my ankles and feet are in so much pain, I'm barely managing not to cry.

I haven't taken a long trip in years. Seven, eight, maybe more. I just don't want to try to figure out how to handle things. Traveling in general makes me tired and I really don't want to be far from home, exhausted and by myself.

Because I cannot travel painlessly, without exhaustion, on my own, safely, I use a wheelchair. I use a wheelchair to take care of all those hidden disabilities that make it unsafe for me without the wheelchair, the hidden disabilities that people cannot see therefore do not accommodate or perceive.

Now that I use a wheelchair all the time I leave the house, I can to a limited extent be the person I used to be - can go out some of the time, do some of the things I want to do, except when the built environment prevents my wheelchair from going where I want to go. I can only do the bigger things if my employed PA is available to go with me, to drive if I get too tired, so I have to plan bigger things ahead, and plan the budget from Social Services that pays for the PA one session a week. I have not made a long trip (or had a holiday away) for eight years, because that is beyond my health and budget, but I do have a master plan to achieve it some day.

I do not use a wheelchair because I cannot walk. I can walk - a bit, most of the time. I took me two years to decide to use a wheelchair, and I was so glad when I did because suddenly people were a bit more understanding, or a bit more afraid of what would happen if they did not accommodate me !Because I have no money, it took me a year of applications to charities to raise the £4K needed for the chair. Then another 8 months to apply for grant for wheelchair adapted vehicle and it takes the whole of my weekly disability living allowance mobility component to pay for it.

I think maybe it is easier in the UK to achieve these things on no money, but you have to have the energy to sort things out, and the means to get the information of how to do it.

I know it is a whole lot different in the US, but is there a government aid system for wheelchairs, and are there charities who are willing to help with fund raising for a vehicle, so that public transport is not the only (unuseable, potentially dangerous) option ?

This is why I have my walking stick even if I'm having a "good phase" and am only walking one block and could probably manage without. It's the "probably" that does it. I can't guarantee that I won't need help, and without a visible sign of disability, I am unlikely to GET the help I need.

The train trouble for me is connection times. I can't get a routeplanner to understand that four minutes is not enough time for me to get off one train, find out which platform my next train will be at, and negotiate an over/underpass to get to it. I'm one of the special few who would PREFER to be faced with an hour's wait, have an overpriced cup of tea, and get from platform 6 to platform 1 in my own sweet time.

Anonymous said ... (12:28 PM) :

Hi Gold fish!

I can understand where you're coming from even though I'm a meer typical partial blindie lol.

I could tell ya my adventure using the rail service 7 years ago! I was making my way, from Ipswich to Loughborough, on a Sunday night. I had to change trains at Yarmouth. The train was slightly late as, at that time it was during the signal box disaster that the rail services were suffereing from. I got off the train to discover that there was no assistance travel for me. It took a while, somewhat to find reception to ask for help and state what I'd booked. Reception was shut and.... I was stuck! I had to phone the parents who ended up having to take me home that night and drive all the way to Loughborough the next day.

I've probably wrote on my blog, a year ago funnily enough, about my disaster on the no. 11 bus trying to get to Foxhall daycare centre. Even after that disaster, it was a battle to get bus drivers to tell me when my stop was due. They'd either not bother or, they wouldn't even know what stop I meant when explaing to them.

They aren't all that great bus drivers. I've only had about 2 of them who were superb! Surprisinlgy so. Yeah, Travels just horrible when I faced with going somewhere I just don't know anything about. The effects of my visual impaiment really kick in during those times.

...rummage, rummage...years ago I had a number for British Rail that guaranteed assistance for disabled people travelling by train.Cannot find it so I googled 'British Rail Disability Help' and yes, they still help, well in theory at least:www.railcard.co.uk/disabled/disableddoc.htm - scroll down to "Crossing London" or 08457 484950 and www.tripscope.org.uk used to be able to suggest help also. Hope this is of use to someone somewhere.

What a wonderful description of the trials or travel for folks, like me, with physical disabilities that other folks cannot "see." This is so like what I face, except I do not carry a folding stool. I don't carry a cane because I would keep droping it.

Due to cervical radiculitis, when I walk, sit or "travel" I will often "develop" a "broken leg" a foot that feels like hamburger with no bones in it, or a broken arm, or even feel severe burns. Of course, I have no such injuries, only the same pain as though I did have these injuries. All caused by my head bobbing around on my neck, the nervs becoming inflamed, and the pain felt in the extremities.

What can be done about the pure hostility we face when we ask for help? I have no idea. But your post describing this situation makes me know I am not alone. Thanks for this. Kathy